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Siezures

Hi All well this is a new one Alan has now started having siezures quite small ones to begin with about 3 to 5 per day then they started getting worse and he was admitted to hospital during the night last last after 2 violent siezures one after the other.He then had another at 4.10am worse one yet and once again the doctors dont know whats causing them and when I asked if it could be Lupus attacking the brain they said they didnt know enough about Lupus to answer my question so I'm afraid its down to you guys again!!!! what do you all think has anyone else experienced siezures these only started last thursday 9th June never had a siezure before this in his life.God I hate this disease I pray a cure will be found so that you all can end what seems to be endless suffering and is it just me because im new to all this or does it feel sometimes like no-one cares what we're going through and that even the medical "professionals"(I use the term loosely) dont seem to care because they simply dont know enough about Lupus.!!!! Sorry just had to vent.
Love to All Mary.x.

Hi There. Actually Rob doesn't have seizures but we both have TN and CNS involvement. Steve is always so wonderful about pointing people in the right direction.

I am so sorry to hear about the seizures. Yes, they can be related to the Lupus. SLE can affect any part of the body and any organ. When the brain becomes involved it is called CNS involvement. This is the most serious form of Lupus. In situations like Alan's it is great that he is in the hospital because usually large doses of steroids are used to get it under control when in situation like he is in now. Once they get them under control they will modify the steroids, anti seizure meds and whatever other medicines he needs to keep these under control or at least for him to get them to slow down. I am going to post a link to a page on the Lupus Foundations information on CNS. I am not going to post it in this note because there are several pages that you need to read.

I really hope that this helps you and feel free to ask me questions if I didn't cover what you needed

I'm so sorry to hear about Alan having seizures now, it is alot of worry but he's in the best place. Here in the UK to stop the seizure's straight away it's is a large valium shot.

Mary i have two forms of seizure's, they started showing slightly at 14 then when i was 18 the two forms showed and i used to have over 18 seizure's a day, i lived in hospital at the time more than home.
Then 3yrs back they diagnosed me with Lupus and had all my history and i was told i was born with it and the seizures besides other things where all linked to Lupus.

They'll keep Alan in hospital and monitor him and also run tests to see what form of epilepsy he as because there's 135 different types, some can be mild and others more progressive while fitting.

I really hope you all the best and Alan and please keep we updated on his progress please.

I did not know that your seizures were Lupus related or I would have mentioned you in my post. I thought your seizures were an illness on top of the Lupus. Sorry about that

One of the reasons they use steroids with CNS involvement in Lupus is that, just like the other related Lupus illnesses, inflammation is the problem. One of the reasons that they can't catch my seizures on the EEG is because I have to be connected with the lack of blood flow happens and I haven't been in the hospital during one. I try to get there as quickly as possible and they have been able to witness and acknowledge that they are seizures (I also have 2 kinds) but they can't get in on the graph because it is going away by the time I get to the hospital.

Alan is in the best place, I agree. I am sure they will get it all worked out!

Last edited by tgal; 06-13-2011 at 12:15 PM.

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

Well you know i had them at 18 and now but when i saw the rheumo he told me the seizures, strokes etc what i've had was from the Lupus because nobody on either side of my parent's family have them or my cousins.

Mari mine gave off reading's while in hospital but it only showed the one the grandmal, so as time went on they could'nt be controlled and they sent me to the brain surgeon he did an EEG on me while awake, it came back blank so he made another appointment for me to keep awake all night and go there and sleep through the EEG he found what he wanted the grand mal and temporal-lobe, he said your head fires like mad while sleeping but not awake.

It's a shame they can't catch you in time to find out what you do actually have with your two lots of seizure's.

They'll keep monitoring Alan to find out, they'll do EEG's and an MRI scan i'll be surprised if they don't but it's a shame for Mary also she sounds so worried and petrified, you have to feel for her besides Alan.

No they won't keep monitoring. They want to do the overnight one but I have no insurance and I can't afford it. I have the tonic clonic (used to be called grand mal) and I have absence seizures. Mine did not begin until late 2009 after the Lupus starting taking firm control. I did finally get the disability due to the seizures but I have to wait until Oct 2012 before I have any insurance.

Just waiting now

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

The Following User Says Thank You to tgal For This Useful Post:

I'm sorry about the money so they can't keep monitoring you such a shame, it's like being in the wilderness only knowing half of what's going on.
The tonic clonic is hardly used here, it's always grand mal i hate it when that happens i can wet myself or froth at the mouth and the other one is rare simular behaviour to a schizophrenic plus you go in trances.
Mine started in 1984 but showed their true colours in 1986 and you will get disability for seizures, i did'nt though mine happened when i had the strokes for 4yrs and they thought i would'nt walk again, mind you i ah fare off it again now the way i am.

Well i hope your insurance comes through Mari, i really do for you and ain't that the usual thing the WAITING GAME

No they won't keep monitoring. They want to do the overnight one but I have no insurance and I can't afford it. I have the tonic clonic (used to be called grand mal) and I have absence seizures. Mine did not begin until late 2009 after the Lupus starting taking firm control. I did finally get the disability due to the seizures but I have to wait until Oct 2012 before I have any insurance.

Mari, every time you post about not being able to get insurance to cover the care you need I just feel sick to my stomach. Shouldn't you qualify for Medicare or Medicaid right away?